30 January, 2010

okay so I was googling Rekha Sharma from Battlestar Galactica, the most beautiful person who ever lived, and one of the suggested search terms was "rekha sharma hot."

Like...maybe someone was trying to do research to find out if Rekha Sharma was hot or not? Because...they weren't sure.

or maybe there are two people named Rekha Sharma and the person was wanting to make sure Google was understanding they meant the hot one. I don't know.

For the record I was about to go to sleep, like I was half asleep with the lights off, and then I was like "it's time to look at pictures of Rekha Sharma on the Internet!"

After a while I found some sad but charming pictures of a time when RS was sandwiched between some Tall Individuals (who I also love):

RS was not able to make eye contact with them or anything, because she was too little! Despite the fundamental sadness going on in the pictures, they kind of make my heart explode with love and awesomeness. I wish that I had tiny versions of them in a box, like Mulholland Drive. And then I could fall asleep and dream about them!!

Oh look, now all the celebrities are happy:

Thank Goodness. They Are All Friends.

(wait wait, this is my favorite They Are All Friends picture:

Buddies!

For some reason it's very important for me to believe that TV show characters like each other in real life.)

29 January, 2010

I'm sort of insufferable because I have ASD. Of course, you shouldn't take this to mean that being ASD means you're insufferable, even though that's how people sometimes define it. Normal people can be really insufferable, especially to disabled people. I don't like talking about my insufferability in a way that sounds medical model or zoo-exhibit-y. However, I am insufferable in my own way and I might as well admit it.

I feel very worried about what other people think, and whether I'm doing stuff right. I constantly apologize. But then I keep on doing the same stuff. I'm not saying this bothers other people as much as it bothers me, but I feel like I completely plow over other people when I talk to them. Today I think I figured out what it is: I don't do conversations. I have a talking mode and a listening mode, and they feel completely different. It's funny because I wouldn't describe myself as a person who monologues, but all I really do is cut my monologues up into pieces and apologize from time to time. I have things I think about saying, all the time, and there are a certain set of people I usually end up saying them to. Which is impersonal, and bothers me.

I think this is why I like being with intellectually disabled people. I can't say the kind of stuff I normally say if I'm with a person who's not as verbal as I am. I have to adjust myself to the kind of communication the other person has, which means I get in listening mode. When I was 17, I went to summer camp and experimented with not telling anyone I was gay, because I had never really gotten to be closeted before. I really loved the experience, and I thought it was because I had such negative feelings about being gay. But now I think that part of it is that a lot of the things I thought up were about being gay, so if I couldn't say anything about being gay, that meant I was in listening mode all the time.

After thinking about this today, and a bit yesterday, I tried to stay in listening mode when I was on the phone with my friend. It was nice. I don't mean to make myself sound like a horrible person. Once I understand that someone has a lot to say, I get in listening mode. It just isn't the way I tend to start out. And being in talking mode doesn't make me feel good in the long run, it makes me feel like I've talked myself out and there's nothing left.

I'm sort of sleepy and depressed (my roommate cries when BSG characters die, and then she gets mad at me for noticing she's crying). I guess I could write about this in more depth, but as it is, I'm just happy to have identified what the problem is so I can be more constructive about it.

28 January, 2010

So, the other night I dreamed that I was making a post about Fingersmith, which is my favorite romance novel--except I guess that romance novel is a genre, and Fingersmith belongs to a different genre. So, of the novels in the world that contain love stories, this one contains my favorite love story, and is one of my favorite novels in general. In my dream, I had decided that Fingersmith could be read through a disability lens. When I woke up I realized this was actually true.

It's sort of hard to describe what it is about without getting into OMG Spoiler!! territory. It's a gothic novel/thriller that takes place in Victorian England. The main character Sue is an orphan who was brought up in a den of thieves, and gets involved in a plot to screw over this rich girl, Maud. Sue is supposed to get herself hired as Maud's maid and convince Maud to marry a particular guy, who is actually a con man. Then they'll work together to make Maud unstable and depressed, get her put in a madhouse, and share her money.

Maud has an unambiguous disability, an anxiety disorder for which she takes sedatives. But she also fits into a particular archetype that could be read as ASD--she's prissy, naive, and social awkward. The whole plan is based in Maud's innocence, stemming from her isolated upbringing; she's an overprotected "pigeon" who can be made to trust anyone. Sue tries to make friends with Maud so she can better manipulate her, and falls into a nursing/protective role; Sue grew up taking care of babies, and responds to Maud's anxiety and neediness. To some extent, I think she becomes attached to Maud because she wants to fix her and make her more normal.

Right now I'm rewatching the movie, which, in an unusual turn of events, is just as good as the book. (I actually saw the movie first, because it's on YouTube; it's forever being taken down for copyright violation, but someone invariably puts it back up right away.) Does anyone else love Fingersmith as much as I do, and/or have disability feelings about it?

I hate this one Television Without Pity recapper, Jacob. I mean, maybe he is an okay person in real life (just kidding, I'm sure he's not), but his recaps are the most annoying thing I've ever seen. They're not like recaps should be. I should know; I started reading TWoP recaps when I was 13, because I don't have any friends, and I still remember the first line that made me laugh out loud: "Previously, Willow wore an ugly brown top while insisting that Tara would never hang up on her." See, it's good because it's kind of funny and focuses on a random part of the scene, while still summarizing the content. This is the point of TWoP recaps. They help you find out what you missed, and/or relive something you enjoyed, while also amusing you, and (if the recapper likes the show well enough) you get to see what another fan thinks of such-and-such plot development. (It's a little annoying to read, for example, the Firefly recaps, because the person who did them really didn't like Firefly, and just picks various things apart. But they're still worth reading, I think.) Starting last year, I've marathoned several TV shows online, and have often read TWoP recaps during or after watching. Especially when I've been watching something like Carnivale which is fairly hard to follow, it's really nice to be able to read a recap that helps me figure out what's supposed to be important. And it's a bit like watching a show with someone else (okay, I have friends now, but they're not always around when I want to watch TV).

But he's either a super prolific recapper, or I'm just unlucky, because so fucking many of the shows I watch happen to be recapped by this guy Jacob, who thinks he's James Joyce. SO UNFORTUNATE. Instead of just saying what happens and what he thinks about it, he launches into these really long, flowery essays about various aspects of the show. Or, sometimes, things that have nothing to do with the show! ANNOYING.

I just went on Google to find out if I am alone. And I'm totally not. Apparentlyotherpeoplehatehimjustasmuch. (Every word is a different link. This was my most satisfying Google experience.)

Anyway, I'm not going to tag every post like this "intellectual disability," because I'm not saying anything really interesting or helpful, but what inspired this post was the most douchebaggy Jacob passage yet:

(...You don't remember [something it's unrealistic for the character to not remember]?...This isn't even [character]-bashing right now: I'm legitimately confused. Because either the acting is fracked or the script is, and with [character] that's always the question, isn't it. So I don't know. Either [character]'s making a choice here, a really ugly and petty and resentful one -- which: wouldn't that be something? -- or the actor thinks that [character]'s just sleepy and confused about shit, which...makes no sense. Or else I've been right all along, and [character] actually is just a high-functioning mentally retarded adult, which means [character's husband] got a retard pregnant, and also that he hits retards. And I'm not totally enjoying [character's husband] right now, but that is way harsh.)

I mean, Jacob says retarded all the time, like a lot of people do, and what else would you expect from someone who's so obsessed with proving his intelligence? Intellectually disabled people are probably his greatest fear, because they frequently manage to be likable and interesting without spewing out incredibly long bullshit recaps about television shows. Whereas he probably thinks that his bullshit is all he has. But with this passage, he took the fucked-up-but-possibly-unintentional implications of his word use and made them absolutely clear. Not only is Jacob an annoying egotist who sucks at his job, he's a horrible person. The More You Know.

27 January, 2010

(edited because I was pretty consumed with anxiety about these possibly being hateful things to say, but I thought that parts of this were good, so I chopped it up)

Being brutally honest: I'm uncomfortable around people who have Real Disabilities. Well--I'm uncomfortable around a lot of people for a lot of reasons. It's sort of a spiraling, compulsive fear. If the person belongs to an oppressed minority, I get anxious and act/look really strange because I'm afraid they'll think I'm prejudiced against them (and this obviously feeds itself, "look, I look so strange, they'll think I'm afraid of them, fuck I'm freaking out, I can't make eye contact, shit, do a facial expression, try to look depressed and distracted, okay"). This can happen if it's a minority I don't belong to, which can certainly be called racism, transphobia, etc. (and I don't think it's right for me to call it something else, if I am reacting differently to someone because they're a person of color, trans, etc.--that is what it is, in practice). However, it can also happen with the two minorities I invisibly or semi-invisibly belong to--gay and disabled. And in those cases, it is kind of a mixture of the ordinary compulsion and anxiety, and also a desire for kinship that I become anxious about because I think it's unseemly and I don't really belong.

The most common way for a person to be visibly same-sex-attracted is if they are romantically paired with someone of the same sex. I guess relationships are like wheelchairs. I know I'm gay, and I'm more inarguably gay than I am inarguably disabled, I suppose. If I was accused of being homophobic, I could just produce a statement of fact: "I can't be homophobic, I'm gay."

Actually, one time, at academic summer camp, this girl who I'd just met made some joke about kissing me, and I froze up and looked really uncomfortable, and she laughed to her friend, "I probably shouldn't be scaring young heterosexual girls," and then left. So that's an occasion when I wasn't able to produce the statement, but I think I'm better now. Or am I? Probably not. My nightmarish employment at a drive-in movie theater the summer before last, which culminated in derealization and a processing speed slower than molasses while I was cashiering (I couldn't recognize the food), which resulted in me getting yelled at by the same person who'd caused all my anxiety, who ironically was a special ed teacher, but didn't know that I was "special," and I didn't know how to explain...wow, I don't think I even realized how ironic and intersectional that story actually is. But anyway, it was in Cape Cod, so lots of gay couples came in all the time, and this middle-aged lesbian couple started working there, and I just wanted to talk to them so bad, I wanted them to like me, or something, and know I was gay. Especially the one who was a special ed teacher. But how do you just say "I'm gay?" Most of the people who worked there didn't especially like me, so why should they like me? When I tried to talk to this woman, I just misunderstood the things she said, and she rolled her eyes.

Also these two beautiful girls who came in and ordered sandwiches and made out for a while and I tried not to look at them, and then they said they didn't want the sandwiches. I was supposed to yell at them for this, but I just couldn't even look at them. Seeing all these beautiful, happy lesbians just made me feel like less of something. Like, even if I was able to produce the statement, was that going to make any of these people say, "Oh, okay, you're one of us?" How am I one of them? I haven't even had a relationship. I'm a defective gay person, not because I'm invisible, but I'm invisible and defective for some of the same reasons.

Yeah, so anyway, yesterday the guy who lives across the hall from me moved back in for spring term. I was introduced to him. He's the only person at our school who is blind. Sometimes I have watched him putting on his coat and putting his tray away in the dining hall, because of the way he moves. But this isn't a real reason to like someone, because he didn't choose to have to develop those ways of doing things, and would probably be offended that I like them. Also, one time in the dining hall he asked me what the ingredients in the omelets were. I am curious about this because I rarely ask people for the things I need; I wonder if it used to freak him out, and his teachers or parents made him practice doing it, or if he's always felt confident about it, maybe because everyone can see without him telling them that he has a good reason for needing things explained.

Basically, I want to talk to him so much that I maybe never will, because it's probably offensive. On the other hand, I also feel concerned about ordinary people things, like not knowing if I should identify myself when I say hello to him, or if I should assume that he can tell. If a lot of people have that problem, maybe people don't talk to him very much. So in a roundabout way, even if I complain that it sucks for me to have to explain that I'm disabled (i.e. I don't explain, and the results of that suck), he definitely has it worse because it's the first thing people notice.

So I don't wish I was Real. That's a stupid thing to wish. Also, being Real isn't possible for me. Even if I didn't try to pass at all, Real ASD doesn't exist because it doesn't look like anything. Some people would treat me like I was "special" (whether ASD or intellectually disabled--although, if an ASD person is read as intellectually disabled, does that mean they're passing?). Other people would think I was high, or traumatized. Other people would yell at me and try to grab me to see my reaction, like when I was a kid. I don't want that to happen, but even if I let it happen, it wouldn't mean that those people thought I was Real. They just wouldn't be thinking of me in words at all. With ASD I feel like there's being fake, or prey, or disorderly conduct. Or being read as intellectually disabled. Or even more than one of those--intellectually disabled people can be prey, after all. But there's no Real option.

The other day I snapped at my roommate because she didn't answer me when she was on the phone. My roommate only has one working ear, so when she is on the phone, she can't hear anything else. I've known her for three years but I rarely keep this in my mind (except in the last few days, when I've realized how shitty I am about it). I guess she could maybe be Real if she made an effort to tell people, but it doesn't affect her that much, except on the really low level of people like me snapping at her without thinking, or thinking that she's ignoring them when her good ear is turned away. At the same time, a low level builds up over your lifetime. My roommate's Facebook description of herself says, "I probably didn't hear you." But she doesn't identify as disabled, and if she did, I'm not sure what people would think.

It's hard to say what's Real. I just know that I'm not it, and that as frustrating as that sometimes seems, it's probably good, because if I was Real, people would make everything about my disability. Just like I do to Real Disabled people when I make up stories in my head about how they probably hate me.

26 January, 2010

One time I read about this TV show that was like a mockumentary and the review I read mentioned a scene where a teacher was talking in a really patronizing way to a student who was intellectually disabled, and you're supposed to laugh at the teacher. I just remembered this today because I realized that I started watching Glee because I thought it was that show. You can imagine what a disappointment that was and soon I got caught up in the disappointment and forgot about the other show. But this is a real show, right? Is it? I want to find it. Does anyone know what it is?

Okay I just noodled around on Wikipedia and I think it might be Summer Heights High. I guess I'll watch it and post about whether it sucks or not.

If it wasn't two years old I'd think this was a parody of Glee; as it is, it makes me laugh a lot:

Mr G is a thirty-six year old drama teacher at Summer Heights High. Mr G not only believes that he is an incredibly talented and well-liked teacher, but that his students also share his intense passion for drama and performance...He is hostile to the disabled students being involved, under the belief that they will damage the quality of his musical.

HA HA HA, whoever wrote this show is clearly psychic

two scenes from Episode 1:

Ja'mie: I think my teachers like me because I'm, like, the smartest non-Asian, and I can do sports and all the stuff that Asians can't do.

(Toby, a boy with Down Syndrome, comes up to Mr. G. and hugs him)Mr. G: This is Toby, one of our specials from the special education center...it's a separate part of the school, down at the bottom, but we allow them to play with the normal kids at recess and lunch and that sort of thing...(hugging Toby with his hand on Toby's back) Normally you're not allowed to touch students like this, 'cause there are child protection laws, but we normally turn a blind eye with these ones. This sort of thing: fine. (moves his hand lower) Not fine. (moving his hand up and down) Fine. Not fine.

be ironic, it would just be stereotypical and boring.

Yeah, so this show is just incredibly stunning in terms of actually being funny in all the ways that people claim Glee is funny. I'm not going to post more unless something really interesting happens that's related to disability. But if you currently put yourself through the agony of watching Glee, know that you should be watching this instead.

One time last year, my friend and I went to a group at our college's Community Service Center. It's hard to remember correctly because it was a long time ago, but I think they were planning on having a program where students would be in charge of organizing the volunteer work in a particular area. My friend hoped to be in charge of organizing the volunteer work with developmentally disabled people, and I was going to help when I got back from studying abroad. (I should probably get on that.) I wasn't really required to go like she was, but I was curious, and also I think there was food.

It turned out to just be one of those things where you go around and say a lot of stuff about yourself. Then, we got put into pairs with people we didn't know, and we were supposed to ask each a question, and then tell the group what the other person had said. All these things are fun for normal people and I don't actually mind them that much either.

The question was, "How do you find and preserve community in your life?"

This question was about as fun as the question, "What did you do over break?" I guess I should explain that that question is hard because I didn't have a lot of friends until college. There are only a few people from high school that I would consider seeing, and I probably only see them once a year. I have one good friend and I see her a lot, but even seeing one person a lot doesn't take up that much time. So when someone I don't know very well asks what I did over break, I feel really uncomfortable, because usually the answer is some kind of music or writing project, and going to movies with my parents. This question is frequently asked just the way you would say "How are you?" with the assumption that I'm going to be able to answer it in an uncomplicated way. But answering the question truthfully means revealing that I have a past where I was more socially nonstandard than I am now. This feels like too much information. It's especially uncomfortable when this question is asked by an authority figure, or as part of some sort of ice-breaking exercise. I think I usually end up reacting with much more confusion than is considered normal, and trying to fudge my activities to make them sound more social than they really were.

But "How do you find and preserve community in your life?" is even harder. It's like asking me how I feel about being heterosexual. I listened (anxiously) as the girl I was paired with described the different groups she is part of at Oberlin, and the church she goes to. I don't remember what I said when it was my turn. I'm not part of any groups. Last year I would sometimes go to the LGBT student group and the group for volunteering with intellectually disabled people, but neither of these was a big part of my life. The LGBT group was fun and probably a little like being in a community, but I didn't really feel close to the people involved except when I was already friends with them or became friends with them outside of the group. I think a sense of groups is something I might be fundamentally lacking. It just seems like something I'm supposed to like in theory, that in practice is about as much fun as eating eggs (analogy explanation: I don't particularly like eggs).

Maybe I don't really understand what a group is. In a group, are you supposed to be one-on-one good friends with every person there, also? Because I feel like I would like being in groups if it was a group made up of all my good friends. But it seems like a lot of work to make friends with all the people in a group, and that's just assuming that I like all of them and all of them like me to that extent.

I'm really excited about next term because I think I might be able to get into my roommate's social group (which I've hovered around the boundaries of over the past two years). I am one-on-one friends with a few people in the group, and on friendly terms with several other people. I think that could actually be nice. A group makes you feel safe because you don't have to make as much effort to see other people, right? I think that's what a group is.

Usually when people think of a verbal ASD person, they think of a person who has trouble making friends and having romantic relationships. I do have trouble with romantic relationships, but I think that comes out of the community thing; if you're gay, you have to know more people, because the chances of finding someone you could have a relationship with are pretty low. It's kind of frustrating for me when people try to tell me that being gay isn't that big a deal and if I just had a better attitude or was a better person, I would have been in a relationship by now. I don't have that much trouble making friends, although as with everything else, it depends on a lot of other factors.

Something that's hard to think about is the future. I have basically figured out what I want to do: I want to write fiction, which is a solitary thing, and I want to work with developmentally disabled people, who I relate with as easily as normal people relate to each other. I know that in order to get a job, I'll need to do an interview, but that's a measurable thing; it's one day, I'll save up all my energy and deliver. And the DD people should recharge me enough so that I can act okay with the normal people I work with.

24 January, 2010

She and her boyfriend, who are Scottish, were told that their baby would be taken away when it was born. When they were told this in November, they went to Ireland in the hopes of being able to keep the baby. Last week, four days after the baby was born, Irish social workers came to the hospital and took the baby away. For the time being, the baby's parents are allowed to see him for two hours a day, until a more final decision is made about whether they can raise the baby or not.

“I know what marriage is. It is when two folks want to spend the rest of their lives together. I love Mark and I want to get married to him.”

"When the Irish social workers said I had to give the baby to them, I felt sick...I didn’t want to hand him over and I started crying because I couldn’t believe what they were saying. I thought I had misunderstood."

"I’ve told the social workers I don’t want him to have bottled milk or a dummy. I feel breastfeeding is so important and at least then he is still having some of me."

They seem to have a supportive family and friends, and besides, the baby has two parents. It's not like Robertson would be raising him all by herself--and even if she was, no one has actually shown that she's irresponsible or lacks the planning or care skills you would need to raise a baby. The way her boyfriend talks about it, it sounds like she organized and kept track of things in terms of going to the doctor while she was pregnant, which isn't something everyone can do. It seems like social services is overfocusing on her diagnosis and not looking at how her disability actually affects her.

23 January, 2010

this video always just makes me annoyed and depressed, because I was never able to record the song properly. I wrote it when I was incredibly upset (and the video is from then, probably like the third time I'd played it straight through, like a half hour after it had started coming into being) and it was on this weird out-of-tune guitar which means I can never really do it properly because it ends up in slightly the wrong key. I mean, it was straining the hell out of me but it still (mostly) sounds clear but you can also hear it hurts, which is this creepy awful balance I have constantly tried to get because I've been obsessively trying to record it, all the time, for the past ten months. It never works. The closest I got was actually a really slow rearranged fingerpicked version with bar chords--which was almost okay just because it was super different and I managed to keep the "oh please just let it sound okay" out of my voice. It's basically doomed though. But I tried again today.

Anyway, there was a post at FWD that said "what are three words you would use to describe your disability?" and I wasn't sure, but having been messing around with "Trial and Error," I guess that's the answer.

I have a tendency to call people "trial," as a pet name, and also as a criticism behind their backs. I think I must have started around the time I wrote this song, which is where the line came out because the song was kind of an apology: "I know I'm a trial," and then it turned into, "I know I'm a trial...and error."

Some things: it is really hard to feel like you just exist to test people's patience. Like Saint Juniper. I used to try to write songs about him and want to be like him, but it's just really hard to feel like that's all you're ever going to get to be, the jester of the Lord, the person who's so oblivious that normal people end up being moved by it. Being that dependent. It just kills me. When I call people a "trial" it's usually a joke, to their face. When it's not, it's because I think the person is really insensitive and mean, even if it's not on purpose, so I think of them as a trial I have to go through. I hate the fact that with all the effort I put in, I might still be a trial. I wrote this song when I did something incredibly invasive and horrible to someone, in an attempt to be caring. And realized how much I can really invade people and not treat them with respect because I'm trying really hard to do the things that I think are normal, and not be too self-interested, etc.

"Trial and error" is like the worst phrase in the English language. It's easy for you to say if you usually get it right. But on this occasion I was just like, FUCK! It's not over yet? I'm not done yet?

(I change the lyrics and move sections around a lot)

Your heavy heartCan I come inside

I know I'm a trial an/d errorCan't see how it could get much harderMy neurotheology fucks me sideways

So can I come inside

My father says I changed and went awayAm I getting stronger, am I moving forwardOh moving forward, you hurt more/It seems to hurt anyway

I sort of have a theory that people on the Internet dislike me. I shouldn't write about this in more detail because it'll make it sound like I'm trying to attack a particular person and say that they've actually done something mean to me, which isn't the case. I think I am just really excited whenever someone links me or anything (not that this happens on a regular basis, but I never had a blog that people linked to before, so it's exciting) and my reaction to excitement is to sort of tamp down on myself, like, CALM DOWN. BE SENSIBLE.

So, I will tell you what I think: even if people link me, it's just because they sort of feel like they're required to, because of something that I said, but at the same time, they sort of don't like doing it, because they don't like me. It's like, "well, you know, there's nothing really wrong with the stuff she writes about, I mean, yes, she's sort of annoying and an asshole, but let's be fair and unbiased, that's not really the point."

I was thinking about this and it's probably not true. Like, maybe sometimes the Depressing Realistic Undertones that I feel required to try to scout out are--not there. Like, maybe that's sort of incredibly melodramatic, and a reality that would make me feel uncomplicatedly happy instead of happy-within-reason-on-alert...I mean, maybe that's actually the simple answer, and the truth.

22 January, 2010

so I previously mentioned my unfortunate tendency to sincerely like things that you're supposed to like ironically. The worst result of this is probably my love for Cute is What We Aim For, which is this incredibly AutoTuned band for 14-year-old girls that features the ugliest man ever singing about how he hates women. I'm not kidding. Listen to this song that I accidentally covered BECAUSE I CAN'T HELP IT:

I feel sort of anxious because even though I think my cover is rad, I'm afraid of all the 14-year-olds on YouTube finding it and being really mean to me and telling me I'm ugly and stuff. Sometimes when I was 14, boys would come up to me and say, "Feo you!" the way you'd say, "Fuck you." The only Temple Grandin quote I agree with is about seeing groups of teenage boys hanging out at gas stations and being so freaked out you don't even want to get out of the car.

but seriously, this is the catchiest song EVER? and I'm from a commuter town so I'm bound to like it. Not my fault.

It's true that the concept didn't exist, but we can theorize about whether people had some of the same feelings and relationships that we (queer people) have. I think that's what people are saying when they say that someone was "gay" (or "trans" for that matter--it gets a bit messy because some of the same people are claimed as gay and trans, but this is to some extent just a result of not being able to tell 100+ years on why someone acted the way they did).

You can believe in an innate sexual orientation and I guess I do. I think people can act based on their innate sexual orientation without identifying it that way. So I can try to figure out if historical figures might have the feelings and experiences that would add up to that.

It's kind of like people with autism theorizing about whether famous historical figures like Einstein were autistic, or about whether the idea of changelings came from autistic children. Obviously changelings weren't perceived as kids with disabilities, they were perceived as monsters. But autism is real, and if they were autistic, that's what they really were; they shared an innate quality with modern people who are autistic. They weren't really changelings just because they were thought of that way.

I mean, we're stuck in our time too and maybe our concepts are going to be proven wrong, or at least become obsolete, but I think we can try to find history that involves the kind of people who we describe using those concepts. I don't think it's inaccurate to say someone was gay because being gay doesn't necessarily require calling yourself gay. And the thing is queer and trans and autistic people are always being accused of being some new invention, and told that we have no history; that's why we're kind of starving for it and that's why we claim people. So making a big deal out of the fact that "they didn't identify that way" actually seems kind of cruel. This is important.

21 January, 2010

I mean, it's not super brilliant and accurate, but I'm really glad I started cutting it. I don't always do it myself but I have been doing it myself most of the time for about a year, and this means not having to wait for things, or rely on other people, or sit still, or put my head next to something loud. And all those things amount to HEAVEN.

Anyway, this summer I had a blog that I was using to keep track of what I ate, but because it was a new blog I got overexcited and would post these really detailed and thought-out posts about music and ASD. I've had a livejournal since I was 14, but I tend to post whatever comes to mind and not really work hard on it. So my blog this summer ended up being kind of the beginning of this blog. And I found this post that I think is good:

I kind of hope I marry another person with ASD. In my very very brief relationship experience I've always felt like a curiosity at best. It's been like I'm this CUTE THING. Which is sort of how I get along in life, because I don't process information very fast etc., so a person has to think I'm cute or they get frustrated with me. It does serve me well, but it also makes me angry if a person and I actually become good friends, or something else, and that's still what they think of me. I'll just come out and say it: I think I'm really smart--in terms of the way my brain actually moves, not necessarily in a way that other people can see on a regular basis. And although I'm not a good musician technically, I think I'm good at the kind of music I do.

So here are things that don't work: people not thinking my music is good--like, it's fine if they don't like it for a good reason (RL told me in detail why he didn't like it, and I really enjoyed that), but I feel like people just IGNORE the fact that I'm a good writer and singer and have good melodies, because it's childlike. And, people not thinking I'm smart. People being really fucking surprised that I know what things are.

Also, people thinking that I can't handle myself and they need to like comfort me or make decisions for me. I consider myself a moral person and all but that doesn't mean I like all that lesbian shit, like epic amounts of cuddling and holding hands and no snark. OR GETTING ENCOURAGED TO ACT MORE CONFIDENT. I process stuff really slowly. I pick up on things really badly. It's a legit thing about how my brain works and my anxious affect is a)perfectly justified, and b)a pretty good defense mechanism so people know what to expect.

Or people acting really shocked and horrified when I get angry. I mean, I think my anger is possibly more disturbing than other people's anger because it's so straightforward; that makes sense. Even when I intensely express my opinions about something, some people have a really negative reaction because I guess I look so serious, even though I'm usually happy when I'm talking about something like that. Plus, I'm sure it's even worse after all the CUTE--it probably feels like a betrayal or something, this CUTE THING suddenly speaking loudly and not smiling and demanding to be listened to. So. Fucking. Boring.

The way it is is that I'm really all those things. A lot of ASD people are. There's the childlike stuff, the jumping around and spaciness and innocence, which I wouldn't want someone to try to coach me out of, and it's cool if you DO think that's cute, but then there's also the "bad"/guy-ish stuff, the devoting myself to projects for four or five hours without a break, the getting overwhelmed and not liking surprises, the very harsh-looking reaction when I hear or see something that I think is wrong. Anyway, I want to be with a person who likes/understands all that stuff. And I want to do the same for her.

19 January, 2010

Noah: I'm going to enter the New Yorker caption contest.Me: You should enter the anti-caption contest, it's better.Noah: No, because I want you to see me in the New Yorker. My caption is going to have your name in it.Me: What?Noah: Like, "So Amanda, when can you start work?"Me: But how will I know it's my name and not another person named Amanda?Noah: Because it'll say "submitted by Noah Schwarz."Me: Noah, I really miss you, I sort of forgot. I still feel like you're a lot of cookies that I found under the bed, you know? I think I'll always feel that way.

Me: Oh, you're not boring! You're the bane of the world. You're, like, the Hound of the Baskervilles!

When you're ASD being normal is like a mosaic, and what I mean by this is that it's all a bunch of systems and rules that get smaller and smaller until you can barely see them and I just look like any other picture, but I'm really made up of squares and that will always be visible at close range. I'm clunkier and not as fluid.

eta: If you've ever seen the Mr. Show episode where the two guys get married to each other on a dare and then after 50 years one of the guys dies, and the other guy is like "...my life!" that is sort of how I feel about FWD being down (don't ask, sometimes I think of these analogies that seem really precise and touching to me, and then other people are just really offended and confused--but I miss FWD, is what I'm saying).

18 January, 2010

A world-renowned designer of livestock handling facilities, a professor of animal science at Colorado State University, and one of the world’s highest functioning autistics, the most recent chapter of her life is being written right now, or filmed to be more specific, in Austin, TX.

The grammar is annoying--the most recent chapter of Temple Grandin's life is a world-renowned designer of livestock handling facilities? How can a chapter be a designer?--but all in all, this is a pretty exciting sentence because it means that I'm like the most high-functioning autistic person ever, because I'm definitely higher-functioning than Temple Grandin. Actually that's a messed-up thing to say, because I think you should judge functioning by ability to carry out goals and not by passing, but by a conventional definition of functioning, totally, I win. And okay maybe they mean she's one of the highest-functioning people with Autistic Disorder--but I know people with Autistic Disorder who are conventionally higher-functioning than her. What the hell do they mean by higher-functioning? Oh right, they just mean that she's really accomplished.

What? I mean, when someone is writing an article about a regular person who accomplished something, do they call the regular person "one of the highest-functioning regular people?"

Unlike some people (or maybe I'm doing a strawman, I don't know), I do think there's a value to functioning levels. It is fucked up for me to go around acting like I know how things are for a nonverbal person, or a person who has more severe social disability than I do, or a person with an intellectual disability. I really don't like the queer/trans community (oh no not again!) because bisexual=/=gay and queer when your parents are liberal=/=queer when your dad is Alan Keyes and genderqueer=/=binary trans etc., and I think there are definitely instances of people who completely lack understanding of how hard stuff is for other people and just want everything to be an adorable melting pot. (I could go into more detail, but remember this is the stuff that makes me depressed.) But randomly messing around with what "functioning levels" means and making it mean eleven different things is not actually helpful to anyone.

In Mere Christianity, CS Lewis has a chapter where he talks about sin and goodness as it relates to a person's psychological makeup. He says that you can't tell from the outside what God thinks of a person because you can't tell how hard a person is working. He uses the example of a person who's terrified of cats picking up a cat for a really good reason. From the outside you might not be able to tell what a good thing they're doing. I guess I think it's important to keep this in mind when you're looking at pwds (or anyone, actually). You don't really know how hard someone is fighting against their impairments, and you definitely shouldn't decide that someone doesn't actually have impairments because they seem to be doing okay.

So I guess it's hard to identify severity because some people might fight their severity better than others. Or do a better job fighting because they have more support--maybe people only ever fight well because they have support. But I think that identifying severity matters, anyway. We should know how much of a force ASD is exerting on a person, right? Although in the end, I don't know if the force ends up equaling the severity, or if it's the end result. Like, the force of ASD minus how well the person does.

But if we're just going to identify someone as high-functioning because they're a brilliant scientist, regardless of what their ASD is actually like, then I don't see the point of going on about functioning levels at all.

It's sort of hard to explain what I mean, but I think that a lot of my difficulty in Doing Stuff comes out of a fear of becoming so absorbed that I lose self-awareness or awareness of time. Of course this fear is not without merit.

It makes me nervous to watch a movie. This is funny because I watch so much TV, and in marathons. But I usually watch TV on my computer, so I know exactly when it will end. Also, TV shows are usually pretty much the same length--about 20 minutes, about 30 minutes, about 40 minutes, or about 60 minutes, depending whether they're on pay television or not. Watching a 72-minute movie is actually scarier than watching 2 episodes of Mad Men, which takes 80 minutes. My dad got annoyed at me last year because we were watching a movie and about halfway through I picked up my computer and started doing my Internet things (you know, email, livejournal, etc.). He said that if I didn't want to watch the movie we should stop and finish it later. But it wasn't like that, exactly. I needed the computer to ground myself in time.

I suffer from an urge to multitask when I am doing something that might remove me from time. I used to just think it was a sensory thing, and I still think that might be part of it. It's very important for me to have something to eat at movies and even at plays (for some reason plays aren't quite as intimidating to me as movies in the theater). I also tend to feel that I should have something to eat while I'm doing work. This probably accounts for certain things being my favorite foods and not others (a particular rhyming concoction comes to mind). I like foods that last a long time and are easy to eat while doing something else.

What is work? Work is whatever a body is forced to do. Okay, not really. Work is whatever my body thinks it's being forced to do. For example, since I was a kid I have wanted to be a fiction writer, so my body thinks it's being forced to write fiction, so I don't write fiction very much because it makes me nervous, and I have an idea that I need to set myself up with a big supply of food in a comfortable place or I won't be able to write fiction. The only reason this blog exists is because I started writing in it as a way to procrastinate. If I ever get too excited about this blog (whereas now, I just look on it with a huge amount of affection because it is the most calming place to waste my time, but it's not entirely unproductive because some people read it and sometimes I'm writing about important things), I'll probably start writing a lot more fiction.

I produce a ton of music because music doesn't feel like work yet.

Latin is work.

But anyway, back to the losing time thing. When I was six I entered kindergarten and turned into a monster. Everyone thought that I had probably been molested because I sat curled up in a corner reading the same books over and over, and hit anyone who tried to make me do schoolwork. (I went to a Montessori school so I was able to get away with this for an astonishingly long time.) Clearly I was lost. The first time I recall noticing myself being lost was when I was reading a Narnia book in the bathroom and I looked up and saw that the sun was setting. I was existentially heartbroken and terrified and came crying to my dad, "I read in the bathroom until sunset!"

I guess this is possibly why I don't read books; maybe they make me feel scared in the same way. Anyway, the reason I started thinking about this is that it's winter term, which means I'm supposed to be working on a project I made up myself, on my own. My project is reading De Caelo et Ejus Mirabilibus et De Inferno by Emanuel Swedenborg. It seems like a really cool book but in the four days that I've had it, I've only read two pages. This is embarrassing. Today--as I had been planning to do every day since I got the book--I finally trundled myself off to the library where I sat in the empty and unlooked after library cafe in the booth next to the vending machines. I bought some M&Ms to be my multitask. But I ate the M&Ms while writing in my notebook about how I like ASD culture better than queer culture. I thought about some more snacks and drinks that I could buy from the machines, but decided for the time being to just start reading the book.

I read. And read some more. I read twice as many pages as I read in the first four days, in two hours. I kept thinking I should stop. Or, I kept thinking I should want to go on one of the library computers and check my email, or that I should want to buy some Doritos. But I didn't want to that much. I just kept reading. I kept feeling vaguely anxious about what I was doing. I kept feeling like I shouldn't be liking it, because it was work; how could I stand it, without something to guide me through it, like a bowl of cheese and peas? Or an episode of Firefly going in the background, like I used when I was interning at the school and had to keep myself in time while I was getting dressed and making breakfast? But after a while, under the anxiety, I realized how happy I was and how much I was enjoying myself.

I don't know what to make of any of this. I love trains. My ideal life would be one where I had to commute to a job, maybe an hour each way, on a really comfortable train, like a Metro North. I love trains because when you're on a train you're stuck inside someone else's schedule and you can't get lost. Trains are the easiest places to write and read.

16 January, 2010

It just bugs me, I feel like the pictures aren't lined up quite right. But I LOVE my habitat this year. Maybe you can't tell but the bed is pushed all unevenly against the wall so that one side can be my reading/eating/etc. area (with a huge shelf and a pillow to lean on) and the other is for sleeping. It's magic. My roommate and I spent the whole day watching Battlestar, mostly in the habitat. I felt kind of useless. But. I was so happy.

14 January, 2010

When it comes to ASD, the medical model is woefully inadequate.* According to the medical model, some really specific thing (like extra time on a test, or magnifying or screen-reading software) can make the person learn just as well as other students. Even if the professor doesn't believe the student's disability is real, doesn't like the student in particular, or doesn't believe disabled people should be going to college, they can be forced to allow the accommodation. And all is well! Well, not really, if the professor is an asshole, but that's the theory.

But with ASD there is not something you can ask for like this. The professor has to be okay. If the professor dislikes or disrespects a person because the person moves or talks in a nonstandard way, the person is fucked. In my first term of college I had a professor who really disliked me and formed opinions about what I was like because of my way of speaking and talking. I wasn't blameless--I accidentally came late to the first class, and forgot to turn in an assignment (which I had completed; I just forgot to turn it in)--but my professor took my mistakes and combined them with my ASD presentation to create a narrative where I was lazy and didn't care about the class, even though my other actions showed that I did care. He was openly contemptuous to a degree that made me cry, but because I hadn't been a perfect student, I felt like there was nothing I could do. I felt I had to drop the class; this would mean I'd have less than the required amount of credits, but I was too anxious to do the work.

But fortunately, my professor referred to me as "really weird" when he was talking to another student, and she told me what he said. After talking to the head of disability services (more for emotional support than anything else), I confronted my professor. By stating outright that I knew he didn't like me and had insulted me to another student, I was basically able to force him into being nice to me for the rest of the term. He claimed I was imagining his dislike of me and the other student was lying; but I wasn't looking for an apology, just a less terrifying professor.

Hooray! But most professors are not dumb enough to insult a student to another student, so most ASD people in this situation wouldn't have such measurable proof of malice. Also, it was really lucky that he happened to say this to someone I was friendly with. ASD students are probably less likely to be friendly with their classmates, so they'd be less likely to be told that their teacher insulted them. And they'd be less likely to ask their classmates for their opinions on whether the teacher is acting inappropriately. I am super lucky that I didn't have to drop the class.

An ASD student really, really needs professors who can interact with a person who acts different without having a total overreaction. I would say that my school is really accessible to me because (except for that one glaring exception, who has fortunately now retired) most professors don't overreact to my difference.

(*Of course, the medical model is actually woefully inadequate for other disabled students as well. I previously mentioned how my friend was patronized by a professor because he has cerebral palsy. The disability services office can provide him with a notetaker, but not a professor who understands that slurred speech isn't indicative of low intelligence or immaturity.)

okay, so I just finished giving myself the Adult Asperger Assessment and would like to share that as I expected, I am Pop Culture Normal, i.e. I don't have Pop Culture Asperger's Syndrome.

Before you suggest that maybe I just don't have AS at all and this whole blog is a ridiculous lie, I would like to remind you that as a kid I was mistakenly thought to have been molested because I was such a weirdo, and sent to a psychologist who told my mom, "It's almost like autism, but autistic children can't talk," then diagnosed with PDD-NOS at age ten, then diagnosed with Asperger's at age 14, and went to a psychiatrist when I was 16 who casually confirmed that I seemed AS to him (I was there for other reasons--basically a less competent psychiatrist had put me on antipsychotics because I talked too much, then put me on Adderall because like most people who are taking unnecessary antipsychotics, I was really depressed and listless). To be 100% honest, I also got kicked out of a study for AS kids when I was 16 because I was too good at reading facial expressions, but they didn't actually say I wasn't AS, just that I was either not impaired enough or already too good at coping in that particular area to be helped by the product they were testing. So like a lot of women I compensate too well to be considered legit, but there has been lots of professional opinion my whole life that I am ASD.

But let's see what Simon Baron Cohen says! I'm not posting my whole comments about the AAA, but just the ones that I think are striking.

Social Impairments

2--failure to develop peer relationships appropriate to developmental level. This is an example of how dumb Simon Baron-Cohen is! When I was 18 my relationships were way behind but now that I’m 21 they’re not so behind. That’s because once you’re an adult, the kind of relationships you’re expected to have stays the same, so if you have ASD, you get a chance to catch up. If this is supposed to be an assessment for adults, SBC should realize that developmental level is a really weird idea to apply to adults, and he should think about whether ASD people can catch up or not. My opinion is that some ASD people can catch up in many ways, and be completely happy socially with normal people, but they’re not going to socialize in exactly the same way as normal people. I think it would be smarter for SBC to see if someone socializes in an atypical way, instead of only counting someone as AS if they’re actually bad at socializing.

This section has a lot of silly symptoms that are hard to understand, like “does not enjoy social situations.” What does that mean? I don’t like parties. I don’t like being with people I don’t know. Yesterday I watched Battlestar Galactica with my roommate, then went to visit my friend Gabe while talking to FFD on the phone, and stayed at Gabe’s apartment for several hours, talking and reading. I enjoyed all these experiences a lot. Aren’t they social? I guess if you put me with a lot of really normal people, and expected certain kinds of socialization, I would do really badly, like I did in the UK. I go to a school that fits me like a glove, socially, as much as any school can fit a person like me like a glove. I guess I had all these symptoms when I was in the UK, so we can say yes on “failure to develop peer relationships appropriate to developmental level.” At least, I think we can.

4--lack of social or emotional reciprocity. Here SBC says a lot of stuff that is really insulting, like, “is not concerned if late when meeting a friend.” That isn’t social, it’s just a rule. Everyone is taught as a kid that you shouldn’t be late. So if someone doesn’t care about being late, it’s because they’re being a jerk, not because they’re impaired. SBC just thinks that AS is the same as being a jerk. Also, “does not spot when someone in a group is feeling awkward or uncomfortable,” is funny, because if normal people were good at identifying and helping awkward people, then Simon Baron-Cohen would be out of a job. I do think comforting people is scary (but interesting), so I guess I could say I have some of this. And “is not upset by seeing people cry” is technically true; I like seeing people cry because it makes it easier to figure out what they’re feeling. But the person described in this section is just such an asshole that I’ll go ahead and say I don’t have #4.

Stereotypy/Obsessions/Rituals

3--stimming, which for some reason he gives no examples of like he does the other symptoms. People try to leave stimming out of pop culture AS because it doesn’t fit into the brilliant jerk scientist stereotype. Anyway, I stim of course.

4--persistent preoccupation with parts of objects/systems. #4 is weird. When I first read it it didn’t seem like me at all. Then when I actually looked at the examples, some were things like “usually concentrates on the small details rather than the whole picture.” Wouldn’t it make more sense to describe #4 as “having trouble generalizing” or “having trouble seeing the whole picture or the ‘gist’ or the socially important part of a situation?” SBC makes it sound like this is all about some weird interest in license plates or something, instead of a learning impairment. Well, by his standards, I don’t have #4.

Communication

2--marked impairment in the ability to initiate or sustain a conversation with others. I feel the same way about #2 as #1 (turning conversations back to yourself/your interests)--sort of, a little, but not to the extent that he’s implying. I don’t like parties because they feel unpredictable and I feel like no one says or does anything important and I feel lost and anxious and like I should be doing something else. But I like just talking to one or two other people for hours, and don’t consider that a waste of time at all.

4--inability to recognize when the listener is interested or bored. Oh look SBC has actually taken into account that ASD people adjust their behavior: “Even if the person has been told not to talk about their particular obsessive topic for too long, this difficulty may be evident if other topics arise.” GOOD JOB SBC!! Anyway, I guess I have #4, I have no idea whether people are interested in what I’m saying a lot. I check a lot verbally, and basically assume that if someone is my friend, they think I’m interesting, and I try to make the other person talk from time to time, and I don’t really talk about my obsessions at all, and I just assume that all of those coping mechanisms result in me not talking too much to people who are uninterested.

5--frequent tendency to say things without considering the emotional impact on the listener. I guess. Sort of. I’m just having trouble not saying “sort of” to all of these communication ones. But I feel like even normal people would say “sort of” to some of them.

Impairments in imagination

1--lack of spontaneous make-believe play appropriate to developmental level. No. Also! The symptom “finds it difficult now to play games with children that involve pretending” doesn’t make any sense because if the person isn’t at an appropriate developmental level, then wouldn’t this mean that they would actually enjoy being with children? NO IT WOULDN’T BECAUSE PEOPLE WITH ASPERGER’S HATE FEELINGS AND ANYTHING GIRLY.

Prerequisites

2--clinically significant impairment in social, occupational, or other important areas of functioning. Does executive function count? Wait I didn’t realize that SBC never talked about executive function at all! Executive dysfunction is even more uncool from a Pop Culture AS perspective than stimming.

4--no clinically significant delay in cognitive development or self-help skills or adaptive behavior. Dude! He just kicked out executive function problems altogether because he think AS people only have problems with things “linked to social awareness e.g. personal hygiene.” I don’t understand why SBC even claims to be studying AS at all because he’s just studying “people with bad social skills.” That’s all he thinks it is.

Social Impairments--3/5 required, I got 3, but only because I was stretching it; only "difficulties in understanding social situations and other people’s thoughts and feelings" was inarguably true about me.

Stereotypy/Obsessions/Rituals--3/5 required, I got 3 without trying, but had trouble judging the other two.

Communication--3/5 required, I had a lot of trouble judging this. Somewhere between 1 and 5.

Impairments in imagination--1/3 required, I got 0 BECAUSE THIS IS COMPLETELY STUPID AND HAS NOTHING TO DO WITH AS. If AS gets remade as something about being a particular kind of nerd who likes taking apart machines, I just don't see what the point of the AS diagnosis is anyway. SBC isn't trying to identify a collection of impairments that people need help and support with, he's just listing a bunch of stereotypes. How is preferring nonfiction to fiction an impairment? How is not liking to play with children an impairment? Is one ASD person better-functioning than another simply because they like reading fiction? How does this make any sense?

Sarah made a post about how Simon Baron-Cohen is the most boring person who ever lived. Actually that's not how she put it but that's what I got out of it. He made something called the Adult Asperger Assessment which is for diagnosing adults with AS. And by AS I mean, Simon Baron-Cohen's version of AS, which I don't have, because I always fail the AQ test. It's sort of weird that I keep taking it as if I'll get a different result. I guess AS has become such a pop culture phenomenon that it's possible to have actual AS without having the pop culture version of AS, and vice versa.

I am in the process of giving myself the Adult Asperger Assessment, but I'm sort of screwing around and seeing if it's even possible for me to get a Pop Culture AS diagnosis. I don't think it is.

13 January, 2010

So I went to the Onion AV Club and it said that Jay Reatard died and I was sort of glad. I don't know anything about him except that he called himself that, but hell, I'm just so fucking sick of people thinking that the word retarded is okay and acting like it's ridiculous for anyone to have a problem with it.

It's really rare for me to criticize anyone for saying it, especially in real life. But when I do, don't worry, the other person always acts prissy as hell. The AV Club bit linked to an interview with him they did a few years ago, which is here, where he says, "who cares? Your average 6-year-old uses it as an adjective...It's a name...When I was a child, my grandmother raised retarded people for a living. I spent my youth, when I was 4 or 5 years old, playing with [them]...I don't want people to just laugh at them. It just stems from how I do really dumb shit sometimes."

I'm not quoting the whole answer, because he said something about the people he played with that I find kind of gross. It's just fucking boring. At FWD they say you shouldn't use "stupid" as an insult, and I don't know if I agree, but I do find that there are a lot of words I prefer, like boring and cowardly. That's what my irritation and anger is usually about; I am totally, completely bored of hearing people using the words "retard" and "retarded" in an insulting manner, or making fun of people with intellectual disabilities. And I'm bored of hearing their dumb descriptions of why it's okay. Because everyone uses it! And I forgot that retarded people are actually real! I guess that being insincere and not caring about stuff is maybe supposed to be good if you're punk or whatever genre Jay Reatard was, but okay, I will just state that if your music genre thinks the word retard is okay, then your music genre is boring.

Anyway, I am sorry he's dead; he was only 29 and I'm sure he was a good person, and even if he wasn't, it's sad for anyone to die. But sometimes I am a shit and feel little flashes of triumph when I shouldn't. I just hate that word. And I hate the excuses and I hate how people think insulting disabled people is cool and smart.

When I was in twelfth grade, my calculus teacher would sometimes bring his baby to class. Many of us were infatuated with the baby and would ask to hold her and play with her. She had Down Syndrome. One time he brought her to an extra help session and was making faces at her to make her laugh. One of the girls said, "Make that retarded face at her."

His character has a normal reason, so it maybe it doesn't count, but he could definitely play a Somewhere Else person in a movie if they needed him to.

If I have to, I am massively good at dropping out behind my eyes. Sometimes I don't mean to. I'm prone to losing time. I used to think I was possibly epileptic. I think I'm just your standard-issue dreamy person, though. I don't really like the idea that ASD people aren't Somewhere Else because I know that I am (sometimes). I think the thing is that people make such a huge deal out of it and think it's the most important thing, when it's probably just a reaction to stress and advanced focusing skills. Going Somewhere Else isn't actually autism. At the same time, it's certainly there.

It's hard for me to explain why I worry about my weight, or why I dye my hair. But it's also hard to explain why I script--but things do go worse when I don't. I need to have qualities. Something needs to be ongoing.

A Feministing thread about this video was linked by Ouyang Dan on FWD and it (the thread and the video) is legitimately the most boring thing I've ever seen in my life. Everyone on the Feministing thread is shitting themselves about how great it is for 14-year-old girls to be expressing these sentiments which is like--really?

1. No one who's 14 still plays with Barbies anyway, so I don't see how it's some amazing rebellion for a 14-year-old to make fun of Barbie. It reminds me of how when I was eight my friend and I used to watch Blue's Clues (which is aimed at 3-5-year-olds) and make fun of how Steve didn't know anything.

2. I would have killed to look like these girls when I was 14. Actually I still would. I guess I shouldn't make assumptions about how other people feel about their appearance, but it's just hard for me to imagine that this song comes out of a struggle, that those girls have felt really bad about themselves and now they're writing this song to fight those feelings. These very pretty, thin girls are writing a song about how you don't have to be pretty and thin! Yeah! Awesome!

A good example of something not-boring is Sleater-Kinney; specifically, Corin Tucker. Corin Tucker is different from these girls because she's actually talented, but also, she isn't incredibly skinny or conventionally pretty. I've seen her be called fat. I'm not saying that you should like bands because they're less conventionally pretty, but just that being part of Sleater-Kinney fandom actually made me feel less anxious about the way I look, whereas the Care Bears on Fire video says the right words, but doesn't make you feel anything different.

3. I have to admit to not feeling a ton of pity when women say things like, "I have a super high metabolism, and people always tell me I'm too skinny and should eat something." It sort of reminds me of "It Ain't Easy Being White" by Gob Bluth:

I know that I'm not seen as fat--I'm about a size six or eight--but I know a lot of girls who are a lot thinner than I am, and I've never felt good about my weight. If I somehow get one of those metabolisms and become a size two and everyone keeps telling me to eat something, I'll be incredibly delighted. Maybe I'm displaying insufficient empathy, but seriously, I just can't imagine that these magic metabolism people feel as bad about being skinny as they claim. How can they?

But that said, that doesn't mean that "eat a sandwich" is actually a feminist thing to say. First of all, some women are not thin because of their metabolism, they're thin because of an eating disorder, or another health reason; criticizing them for their thinness is hurtful. Second of all, when women are thin because of their metabolism, it's still kind of a stupid, messed-up thing to say, even though they're the privileged group. And finally, the bogeyman (implied when women bend over backwards to insist that they're thin because of their metabolism)--some women are thin because of a really strict diet. But why insult those women, either? To reference yet another dead TV show, this reminds me of a scene from Buffy the Vampire Slayer, in which Veruca and Oz have the following exchange:

Oz: Big lunch?Veruca: I like to eat. I hate chicks who are like, "does it have dressing on it?"

To give some background, Veruca is a villain, though she's a small-scale, human-relations villain, not a Big Bad like Angelus or the Mayor. She is basically in the show to try to seduce Oz away from Willow. Veruca has various things in common with Oz that make Willow feel left out, and in the scene I'm quoting, Willow soon approaches Veruca and Oz and is made to feel uncomfortable because they are talking about music (they're both musicians and Willow is not). Veruca seems to relish making Willow feel uncomfortable and left out.

Feeling stupid and uninformed about music (IIRC, Veruca and Oz are talking about some very stereotypically masculine thing, like gear) is an archetypal feeling for a woman surrounded by men. It seems like Veruca is setting herself up as "one of the guys;" a girl who understands stuff that most girls don't understand. Those stupid girls, feeling left out of music! How could they possibly feel that way? Certainly not because guys don't make them feel welcome, or anything like that. And it's the same with the food. It's Veruca vs. those stupid girls who are obsessed with dressing and don't appreciate hamburgers and stuff, like guys do! Of course Oz would never find a woman unattractive because she was heavy! Of course Oz would never insult or judge a woman for being heavy! No man would do anything like that. This is just some stupid thing that women made up, because they're stupid, and they like to freak out about things that aren't real.

I'm not saying that Joss Whedon is good on weight issues, because that would be the most hilarious mischaracterization of the century, but I think that particular scene is really striking and accurate. A woman refusing to see the ways women are oppressed, so that she (while still being quite conventionally attractive, if slightly less thin than Alyson Hannigan) can be The Exception, the woman who doesn't worry about dumb stuff.

I sound like I'm going off on a tangent, but this is how I feel about that video. I was told in elementary school and in Girl Scouts that Barbie would fall over if she was a live woman. Everyone knows that. "Barbie Eat a Sandwich" is the most wholesome, socially acceptable song you could possibly write about body image. What if Care Bears on Fire wrote a song about a girl's mother criticizing her weight all the time? Or her boyfriend making snarky comments because she eats a cheeseburger? Or a girl who was actually "fat," not a size four or whatever they are, going to the doctor and having her actual health issues be ignored because the doctor is guilting her about her weight? That song wouldn't be so wholesome and socially acceptable to everyone because it would actually be calling out people who discriminate against women for their size and eating habits, instead of criticizing a woman for being too thin and not eating enough (who, okay, okay, as everyone on Feministing keeps saying, isn't a real person--but that just makes the song even more cowardly and makes me even more annoyed that people think it's so brave and great or whatever).

So, to finish up, this song is just incredibly boring and doesn't say anything cool at all, and now I will post my favorite Sleater-Kinney song:

Basically I think this song is really good, and not-boring, because it portrays the narrator's issues with food in a complex way and shows how they come from the oppression of women. Instead of a woman blaming another woman for being so stupid as to care about her weight and what she eats, we have a woman angrily and sadly expressing how she feels and raging against the forces that have made her feel that way.

(I hope it doesn't come off like I think all eating disorders are related to sexism; I know that's not the case.)

10 January, 2010

me: Who was your favorite Animorph?Mark: Rachel!!me: Oh, of course [Mark is very fashionable]. [FFD] and I like Tobias.Mark: (bursts out laughing) OH OF COURSE YOU DO.me: What the hell does that mean?Mark: Well, I mean Tobias is cool, but, he's kind of the strange one, isn't he?me: Well, he's a bird, so.

(later a text message arrives)"can you be the tobias to my rachel and can i like have dinner in your presence"

Do you agree that there are two kinds of disabled people--people who are visibly disabled, and as a result tend have people overestimate their disability, so that they really desperately want people to be less likely to express sympathy for them and offer to do things for them; and people who are invisibly disabled, and have people constantly tell them to apply themselves and tough it out, and therefore really really enjoy it when someone tries to help them, even clumsily?

I find this idea impossible not to think about, just because of the symmetry. This is probably Like a Person Part Four I guess, but whatever. And also, disclaimer, there aren't really only two kinds, it's just that I am talking about two groups of disabled people, but there are other disabled people who aren't in either group, I'm sure.

I feel like--and not to be a dick, my parents are really nice and everything, but anyway--my parents have always made me be both kinds of people at once, meaning that they'd do lots of things for me that I had trouble doing, but they'd never stop reminding me that I should be doing those things, and it was really bad that I wasn't doing them. They did things like making a point of having me go and order food at McDonald's when I was a kid, because they knew that it was hard for me. So even when I was actually doing the things, I didn't feel normal, because it was A Lesson. I'm probably not being coherent. I don't have much time to write this.

Pretty much my only disabled friend (I have some friends who have mental illnesses but don't identify as disabled) is physically disabled, and he is super spoiled just like I am, rarely has a job, executive function skills are possibly worse than mine are, just learned to drive at age 21, last year his roommate would sometimes come up to me and say, "Can you please get FFD to put a sheet on his bed because he's sleeping on a mattress and it's grossing me out?" At the end of first year, his mom told him not to pack or clean his room, he'd worked hard enough, she would do it.

My parents got to school at the end of first year, and I wasn't done packing--I had taken all the paper off my walls, which you can imagine took a long time, and packed some clothes, but my room was very cluttered, when they came in. So my mom had a very negative reaction about how I was disorganized and hadn't done anything.

I'm kind of rambling and maybe shouldn't be posting this because it might be a gender thing instead of a visible/invisible disability thing, or just something completely different. I do think it's interesting, though.

Anyway, when my friend was in school, he was mostly in mainstream school, but at camp, and as a little kid, he was with kids who had severe intellectual and physical disabilities. He has this thing about how teachers would always tie his shoes for him instead of letting him do it, because it took him longer. Also when he was a kid he sometimes fell down and some bystander would make a production out of it even though he was obviously all right.

My teachers basically thought I was a major bitch and in fifth grade my teacher took me on as a project and forced eye contact on me while telling me how self-centered and arrogant I was until I started crying. She would also take books away from me to train me to talk to other kids, etc. etc. and basically snap at me if I said something she considered impossible, like, "I can't tell if I'm joking with someone or bullying them."

So, if a friend and I go to a movie theater or something like that, and my friend automatically does the talking for me, or if a friend brings me along to her boyfriend's house where there are a lot of people, and talks to her boyfriend in an attempt to find out if I could go play with his guitar, this is something that I find hugely touching and wonderful. Whereas, if I get up to plug in FFD's computer, or bring him his shoes or something, it makes him annoyed.

(I should give myself more time to write things, sorry; am I saying anything interesting?)

09 January, 2010

For the past three years I've been a devotee of College Student Things, by which I mean Christmas lights and sticking pictures to the walls. I mean, I guess I always liked Christmas lights and I started with the pictures a little bit in the last few months of high school:

But then when I went to college, it all just sort of exploded out of me, like this:

Maybe you can't see the best part of the wall papers:

That part is photocopies of album covers and comic books, but the main thing that started to happen to my walls was that I put absolutely everything on them. I used tickets and receipts and little pieces of candy wrappers to fill in the inches of space between pictures and postcards.

Bizarrely I can't find that good a picture of second year, but that's okay because it wasn't that good, I just tried to recreate what I did in first year, which was kind of stupid. It takes a really long time to do this, and it didn't really help to try to follow a picture of what it was like the year before; it maybe even made it worse. Also, different stuff feels important at different times so I feel like part of my wall was on life support and was full of things that didn't feel important to me anymore.

Then when I went home for the summer, I finally decided not to live in my old room anymore. It's really big and it has really bright wallpaper that I thought I wanted for a minute when I was fourteen. It's just hard to concentrate or feel anything in that room. So I moved to the room I lived in when I was a baby; I didn't want to do stuff to all the walls, since I won't be living at home much longer, so I just put up Christmas lights and did the closet:

I don't know why I never took a better picture of it. Anyway, I understand that this stuff will be sort of obnoxious and hipster-y once I stop being in college, but I can't help it, I have a feeling I'm always going to live in environments like this, until I have kids who might trip over the Christmas lights and tear the pictures off the walls--AND ONCE I LIVE SOMEWHERE THAT I PLAN TO LIVE IN FOR SEVERAL YEARS, I COULD DO ALL THE WALLS!! EVERY INCH!!

I just got back to school and so far I have this:

And I forgot to bring BlueTac, but I didn't want to wait last night, so I just stuck things up for now with duct tape:

Obviously, this is revolting, but I can't help but be sort of thrilled by how little time it took, and wonder if maybe I don't really need to do a super precise pattern with no blank spaces.

08 January, 2010

So basically, I think there are ways of being with people that don't involve exchanging strings of words, or are about something besides or more than words. I was thinking about this because I was trying to explain to myself in my head, in an objective way, why flapping your hands is not the same as masturbating in public or asking repetitive questions. Which means explaining exactly why it is that those other two things are invasive.

Hopefully we know why masturbating in public is invasive--you should only have sex with yourself or other people who have agreed to have sex with you; if you masturbate in public you are, on a mild level, performing a nonconsensual sexual act. The reason asking repetitive questions is invasive is because you are forcing another person to apply themselves to the task of trying to answer you, for no reason, because you don't actually stand to gain anything from their answer. It's like asking someone to tie your shoe when you can tie your own shoe. Of course I'm not trying to say that a person who does either of those things is intentionally trying to be invasive; especially if they're disabled or ill, they might not understand the context of what they're doing. I'm just saying that those two acts are objectively hurtful to other people, and I don't see how flapping your hands is in the same league.

But then, while I was thinking about repetitive questions, I immediately thought of situations where it seems perfectly okay to ask repetitive questions. A long time ago I made a post where I said that when I was really overloaded, I talked to my friend "in a way that was like holding hands." What I meant by this is that what I said didn't have a lot of content, and I was just saying it as a way of being with my friend. Also, last spring when I was volunteering a lot with intellectually disabled people, I developed a habit of just saying "hi" to people a lot in the middle of conversations. This is because I had started saying "hi" a lot to people with intellectual disabilities who couldn't speak or process language that well. When we kept saying "hi," looking at each other, and smiling, we were maintaining a connection over a period of time in a different way than the conventional method, exchanging information, which doesn't work for everyone.

So in this case, the word "hi" is not really a greeting, just maintenance, and it becomes something more/other than language. Another example of language as maintenance is something that A.T. did a lot in the last few days of the year. She made a cover for a book with an embarrassing title she was reading, and I wrote on the cover, "Dragon Love: A Romance Novel About Dragons." Over the next few days, when we were sitting quietly on a bus, or walking around, A.T. would sing in an odd, spooky-sounding melody, "dra-gon-love." I would laugh when she did this, so I guess you could call it an inside joke, but I feel like she wasn't doing it because she thought, "This will make Amanda laugh," but was just saying it without thinking of it, the way you would scratch your nose or put your hand in your pocket. Of course, I could be wrong, and I hesitate to say this because A.T. isn't a very affectionate person, but I have a theory that when she was singing "dra-gon-love," it was like how other people might hold hands with their friend or say something conventionally affectionate. It was a way of saying "even though we're not talking I'm still here with you."

and I want to work at this camp for ASD people (I wanted to last year, but didn't get it; hopefully this year I have a better chance because I'm applying earlier and have more experience). Anyway, look at this charming passage from their website:

07 January, 2010

"What are your interests? My interests are California and Harry Potter...sorry, I'm being weird, I guess I'm at the lower-functioning end of the Asperger's spectrum." (I think this was somewhat sincere, that's why it's charming)

"I haven't emailed you because all I can think about is how you'll just answer me and tell me what a dick I am."

"No one really cares about the world or about people." (This is charming because it's a Francisco Hernandez reference!)

A set of pictures of rooms crammed with food, books, clothes, and possibly garbage, labeled "Life skills"

"I thought I should email you before I email my family because you'll get more nervous if I don't email you and think that I'm mad." (same person as #2--how cute is her theory of mind?)

I could say more but I don't want this list to become a Toddopoly, and I think that's likely to happen. Basically, I just feel really lucky that ASD people sometimes get in contact with me because of YouTube, because I don't know any ASD people in real life (well, one person seems ASD, but isn't diagnosed and doesn't describe herself that way). It's nice to watch people become scared in the same way that I am scared, and be careful in the same way that I'm careful.

My friend who seems ASD (who I haven't seen in eight months, but who is on campus, so I'll probably see her within the next few days) is a girl named Jane who always skips around and apologizes for things. One of my favorite things with Jane is that sometimes we both just sort of run off at the mouth using all our apology and carefulness scripts, and then we both rush to reassure each other. "I'm sorry I'm being so weird"/"No I'm sorry I'm being weird"/"But you're not being weird, it's my fault, I'm the one being weird"/"No you're not being weird, I think you're great"/"No, you're wrong, actually you're the one who's great, I think you confused the pronouns you were trying to use." It's like a puppet show after a while; the words aren't really language, just a game. A really safe game full of history.

I am not an especially good friend, by any means, but my friendship can have a systematic quality, and I don't think that's such a bad thing because I'm starting to realize how nice it is in others.

"Ari Ne'eman can talk and some ASD people can't talk so he's not a good representative""oh so who do you think should represent ASD people""um, me""oh okay are you like a nonverbal ASD person""oh no, actually I don't have ASD at all""wait so then isn't Ari Ne'eman more ASD than you""yeah but for some reason 'how ASD someone is' only matters when I'm talking about people who aren't me and my friends"

06 January, 2010

I don't know anyone who is blind, but I have a strange relationship to blindness because it's in my genes, and I decided a few years ago that it would be immoral for me to have biological kids because I don't believe in genetic engineering or selective abortion but I don't want to create a kid who I know will have a rough time. I mean, kids can have a rough time for a lot of reasons, and I don't really think it's moral to create a kid if you can't naturally have one with your partner*, so I think I would have come to the same conclusion anyway. But I started thinking about it because of my genes.

Also, I used to always wish I was a boy, so it would be okay for me to like girls and be overinterested in things, but if I was XY I actually wouldn't exist. Whenever my mom thinks I am being too "flip" about disabilities, she reminds me that her brother, who has the syndrome we carry, told her to abort me if I was XY. I don't know the syndrome, or my uncle, very well. I just know it gets worse as you get older. It's called Ocular Albinism Nettleship Falls and when I try to look it up on Wikipedia there's just a scientific explanation and it doesn't really help me understand what happens to a person who has it. But I guess that you have pretty bad vision when you're a kid, and it gets worse until, by the time you're in your twenties, you're legally blind.

The thing is, I feel like my uncle telling my mom to abort me is not really proof of anything innate about blindness. When I was younger I used to think that I was depressed because homosexuality is toxic and I used to think that my parents should have taken me to aversion therapy or something when I was still unformed enough that it could have changed something. I think my uncle has had a hard time because things were harder for pwds when he was a kid, and also for other reasons that aren't actually related to his disability, but it's easier to imagine that they are.

The reason my mom told me I was being flip is probably that I was being flip. I used to be on this skin medication that's really intense, and if you get pregnant while you're on it, there's a high likelihood of birth defects (according to Wikipedia, the usual ones are "hearing and visual impairment, missing earlobes, facial dysmorphism, and mental retardation"). There's this government program where everyone who goes on the medication has to go on two forms of birth control, one of which has to be the Pill. I've actually been on the Pill quite a lot considering I'm a homo--I was on it for a year or two for my skin when I was 14-15, and then I was on it for several months when I was eighteen because I was on this skin medication. I really don't like taking it, for aesthetic reasons--I just think having a fake period is weird--and besides, it leads to me crying a lot the day before my fake period starts, which I don't enjoy.

This is frustrating because my skin got super horrible while I was in the UK and it hasn't improved much since, but I really don't want to go on the medication again because I don't want to go on the Pill. It makes me sort of mad that I'm not allowed to just say I'm gay. I feel like being gay is considered to be some personal thing that I'm supposed to keep to myself in medical settings because I have to follow all the straight person rules anyway, because every XX person must be having sex with XY people.

Anyway, I was complaining to my mom about this, and I said, "isn't it kind of weird that the government is allowed to legislate against the conception of disabled babies?" and my mom said it's so people can't sue the government if they have a disabled baby, and I said, "well, can't I just sign a form saying I don't care if my baby is disabled?**" and then my mom told me that I was "flip" and "spoiled" for saying I didn't care. She was saying how hard it is if someone's poor and they have three kids and one of the kids is disabled, and I said we need better government services, and my mom says the government doesn't have unlimited resources, which is true although I do think that if stuff was better organized then we would have better services than we do now. My mom also said that I have a biased view because if I read disability blogs, then I only see the perspectives of people who are okay with being disabled.

I guess it is true that I'm flip as all get-out, but at the same time that's kind of a preemptive strike. I think I'm trying to make up for people who aren't flip enough, if that makes sense. I mean, I think our culture has this huge, heavy idea of what it's like to be related to a person with a disability, and that results in discrimination and abuse because people think that it's this difficult experience they can't possibly understand, so if someone kills their kid, or abuses their kid, or publicly talks about their kid in an abusive or threatening way, you're not supposed to react to it as if it's a cut-and-dry situation. It's supposed to be "flip" for me to say that Alison Singer (to use the classic example) did something fucked up, because I'm supposed to be intimidated by Oh My Gosh She Has An Autistic Child. I'm supposed to apply myself, to put a lot of effort into understanding the complexity of her situation. But the truth is, in my opinion, it is not complex, and it's offensive to say that it's complex.

The reason I'm talking about family members and not actual pwds is because I think our culture doesn't think much about pwds ourselves and just thinks about the people who have to take care of us. I really liked Getting the Truth Out, which was a website that deconstructed the portrayal of nonverbal people, and was basically a nonverbal ASD person writing, "hey, I'm actually a person, and way I look and the kinds of help I need are just my life, but they can be written about in really shaming language;" please, as I would say, be human, and relate to people as other humans instead of freaking out about how they seem different. Anyway, I linked it on my blog one time, and my mom said, "well, think about it--someone has to take care of that person." Which is like--so what? The person who made Getting the Truth Out was Amanda Baggs, who I believe is supported by people who do support staff work for a living, so--what's the problem, we're supposed to be upset that people have jobs? How does that make Baggs's assertion that she's a person any more complex?

So, yeah. I think that I have a tendency to act like disability isn't a difficult thing because there's a tendency in the larger culture to inflate the difficulty of disability to ridiculous levels so that people can go around doing offensive and evil things to disabled people. So I'm reacting against that, and probably being a brat, but I just get so frustrated.

Sorry this is incoherent, maybe I'll rewrite it later, especially because it's about two subjects, just some disclaimers:

*I feel weird making statements about what's moral but yeah, I think that if you need to use science in order to give birth to a kid, you should just adopt one, because a lot of people already exist who need parents. This isn't because I think that non-XX/XY couples, or XX/XY couples who are infertile, are particularly unfit to have kids. Adoption is having kids. It's wasteful to make more, but it's especially wasteful if it requires extra effort and money to do so. I'm not trying to legislate this but I feel like people let their distaste for adoption (which is really fucked up) keep them from making the logical and ethical choice.

**I'm never going to get pregnant anyway so it's not like I was seriously saying that I "don't care" about having a kid with birth defects. I personally wouldn't get pregnant in a situation where I knew that was likely; I'm just saying it's weird that people aren't given the choice to say they don't care, because they should be allowed to not care if they want.

***This is not actually a disclaimer, just something that I think is funny: some of the things disabled people's parents say are the same things liberal people say when their kids are gay. Straight people don't like having gay kids, and if they're openly homophobic, they just say this straight out, but if they're not, they tend to express their unhappiness by stating a ton of facts, such as, "gay people can't get married and have non-adopted babies," and, "if you are gay people might attack you," and, "it is harder to find a relationship if you're gay." The upshot of all these facts being, it is difficult to be gay. Thanks for the information, you guys! I had no idea!

From the limited sample of me, I think that when straight liberal parents constantly repeat facts about how hard it is to be gay, that makes it harder for their kid to be gay. And I think that some of the same stuff is true when it comes to disabilities. Stuff is hard, but emphasizing how hard it is can be a cover for prejudice.

PICTURE NOTE: as a lot of us probably know, Photobucket has recently stopped allowing people to hotlink images. For the first few years I was using this blog, I used Photobucket to host most of the images, so now they will not be visible! Until Photobucket goes under, as I imagine it will, you can at least see the images by opening them in a new tab.